About two years ago a group of us came together and said, ‘OK, if we look in Europe we actually find there are disparities in relation to access to care, information about care.’ It’s really a cancer inequality issue and so in order to actually address this we’ve worked over the last two years with patient advocacy groups, so in all 40 different organisations, 20 healthcare professional organisations and then 20 patient advocacy organisations, and the fruits of this labour were delivered in the European Parliament in Strasburg on World Cancer Day on 4th February of this year and that was a European Cancer Patient Bill of Rights. What it does is it acts as a catalyst for change and also an empowerment tool for cancer patients. It looks at the three areas or three articles that we’ve identified that really we feel if we could change those would make a difference to healthcare. They are access to information, so information is incredibly important and there are great differences in relation to the information that’s being given to patients and citizens around Europe, then access to healthcare itself, so be that new diagnostics, be that drugs, chemotherapy, surgery etc. And then the third is that this is delivered in healthcare systems that will ensure optimum outcomes for our patients.
What’s stopping these systems being in place?
Certainly I think budget does and perhaps maybe it’s also how budget is used. If we look, for example, Richard Sullivan from the Institute of Cancer Policy published a study last year in Lancet Oncology and what he showed was actually there are great differences in the amount of spend in different European countries. Richard is a member of the European Cancer Concord which is the over-arching group that’s driving this initiative. So really one has to look and see, well what is healthcare being spent on? What are the budgets being spent on? What we’re trying to say is that really it’s a right in relation to the patients actually receiving the best possible care and allowing for the fact that we are in an era of economic austerity. So we’re realistic in terms of actually trying to deliver something in a cost-conscious fashion and by engaging at different levels with different countries, initially, obviously, at the pan-European level but then also at the national level.
What do you have to help governments and healthcare organisers do these things?
I’ll give you an example: the way in which we feel it is, we regard as a catalyst for change and that it actually will be patient-driven. So it’s very much patient-driven, patients are involved, patient advocacy groups. I’ll give you another example: I’m from Northern Ireland and in our situation we have an inequality in relation to access to cancer drugs. So, unlike the rest of the United Kingdom, we don’t have access to certain drugs so what we’ve done is partnered with Cancer Focus Northern Ireland, who are a cancer charity, and actually brought that to the political level and engaged and looked to see can we actually move that so that we do get that access. So that’s an engagement, it’s a conversation that happens not only with the patient but also with the healthcare profession but also with the politicians.
Could this system be abused by industry?
Absolutely and that’s why we need to make sure that this is done very much in a proper way in relation to looking at the evidence base. One of the things we’ve very much concentrated on over the last two years is looking at the evidence base in different countries of Europe, for example, on World Cancer Day we published both in Lancet Oncology and in The Oncologist in relation to the Bill of Rights and what the evidence base was there to actually look at the disparities that we see throughout Europe, the inequalities, and then use that to try and do something about it. But I agree very much with you, it needs to be done in a controlled fashion and it also needs to have that evidence to back it up. So what we’re not saying is that we just open up Pandora’s box, what we’re saying is providing an evidence base but helping to empower patients so that the inequalities that we see we actually try and equal those.
The correct dissemination of this information is crucial?
Absolutely and we’ve engaged with publicity companies in terms of doing that so that actually the type of message they’re going across are very much messages that are clear, are backed up by evidence, because I couldn’t agree with you more, that information is like no information.
What is the doctor’s role in making all of this happen?
Different from other initiatives that have happened because it’s very much an equal partnership and it has been all the way along. We’ve had a series of fora, meetings, building up the Bill of Rights, building up the evidence base for it so that the doctors and the patients are working together on this. As I said earlier, 20 organisations that are healthcare, 20 organisations that are patient advocacy, and that has really been crucial also in terms of getting buy-in from people so they can see it’s very much an equal movement going forward.
Many patients want their doctor to be decisive so how do you have an equal partnership?
I would tend to slightly disagree with that. I think that attitude is changing; I think we’re more seeing now in terms of actually healthcare delivery that the patient is very much part of the process and one of the things we’ve said in it is very much that the patient participates as an equal partner with the doctor in deciding, making decisions about their whole healthcare. So sorry, but I think that is actually an old-fashioned model and really we need to look at a much more holistic model that actually really involves the patient, not just lip-service but actually says they’re part of the process.
What is your take home message?
If we work together we can achieve a lot of things and what we really can do is make an optimal cancer care initiative that really delivers for cancer patients, not just sits on the shelf but actually delivers for all of us.
